Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Hi All, My mother was diagnosed with Shy Drager about 2 years ago. The worst part of the whole disease (and there are many) is that her feet ache so badly that she can't really get much rest. Does anyone have the same type of symptom or know of anything that might give her some relief. Thanks, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Talk to your doctor about the painful feet. She may need some sort of muscle relaxer or anti-spasm medicine. Massage helped my wife (Charlotte) and we exercised the feet daily as they were a constant cramping problem. She also wanted the covers up off her feet, so I wedged a pillow at the botton of the bed to protect her feet from touching the bottom of the hospital bed AND to hold the sheet up off her toes. Note, that pain meds do not usually help much for this problem. Anti-spasm meds work better. Take care, Bill Werre ======================================= > > From: CMDEL@... > Date: 2002/07/13 Sat AM 06:37:14 CDT > To: shydrager > Subject: Re: Painful Feet > > > Hi All, > > My mother was diagnosed with Shy Drager about 2 years ago. The worst > part of the whole disease (and there are many) is that her feet ache so badly > that she can't really get much rest. Does anyone have the same type of > symptom or know of anything that might give her some relief. > > Thanks, > > Chris > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 My husband Rob has had a lot of problem with foot cramping. He finally got relief from an increased dose of sinamet. Other things that help are massage, and if your mother is able to stand up, rolling the foot on a foam cylinder or even a tennis ball. I suppose you could do either sitting down, but it seems like standing would be less awkward. Interestingly, although as you say there are lots of bad parts of MSA, the foot thing is the one Rob complains about most too. Good luck, Carol & Rob Lexington, MA Re: Painful Feet > > Hi All, > > My mother was diagnosed with Shy Drager about 2 years ago. The worst > part of the whole disease (and there are many) is that her feet ache so badly > that she can't really get much rest. Does anyone have the same type of > symptom or know of anything that might give her some relief. > > Thanks, > > Chris > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 What part of your mom's feet hurt? The tops of my feet just at my ankle joint have bothered me for years. This I attributed to osteoarthritis and being over weight. If I wore a good pair of walking shoes my feet were OK while I was on them but as soon as I walked around sans shoes my ankles hurt like the dickens!!! And upon arising in the AM or sitting for a long time my feet are extremely stiff and sore. These symptoms have worsened since dx'd MSA . Recently saw a podiatrist for nail trim and she seemed to think it was the nerves in that area that are irritated and gave me an rx for a local ointment Xylocaine......... This in conjunction with the analgesic THERAGESIC at night gives me minimal relief. I don't believe this condition is original to MSA but certainly is aggravated by it as my leg muscles and joints from hips down become more and more stiff and rigid. Barbara Pond blacksburg va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 Two things help my husband, Ned, with foot/lower leg cramping -- one was Neurontin taken 3xday, and the other was the use of oxygen (we have an oxygen concentrator not " tanks " ). He is already on lots of Sinemet 25/100 every two hours while awake with an additional Sinemet CR at 7a.m. and 9 p.m. Hope one of these ideas help. Judy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Dear Carol: Thank you for your hints on helping my mother's painful feet. I have noticed your email before and I see that you are live in Lexington. My mother lives in the western part of Massachusetts and I am interested in what facilities there are in MA. that might help her in the Shy Drager fight. Her neurologist has never really seen anyone with Shy Drager syndrome and even though he is a decent man - I thought there might be someone in Boston that we might contact. She really doesn't travel well- just coming to visit me in lin, MA, was exhausting. Sincerely, Chris lin, MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Dear Barbara, The bottom part of my mon's feet are so sore she says it's like walking on glass. They are especially painful at night - and often keep her awake. My father has spent the better part of one year masseging her feet. Thanks for your ideas and please take care of yourself. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Greetings Carol! (And ... And Bill !!) Carol, you noted: > Interestingly, ... the foot thing is the one Rob > complains about most too. AMEN! There are days I would give ANYTHING to have my feet hacked off! If I face stress at work (or home), then the feet become FAR more painful. Some days I can not even put on my hiking boots. Interestingly, a short nap often helps me move the pain back to a reasonable level. It doesn't eliminate it, but it helps. And yes, I find that adding an extra muscle relaxant helps. Regards, =jbf= B. Fisher Re: Painful Feet My husband Rob has had a lot of problem with foot cramping. He finally got relief from an increased dose of sinamet. Other things that help are massage, and if your mother is able to stand up, rolling the foot on a foam cylinder or even a tennis ball. I suppose you could do either sitting down, but it seems like standing would be less awkward. Interestingly, although as you say there are lots of bad parts of MSA, the foot thing is the one Rob complains about most too. Good luck, Carol & Rob Lexington, MA Re: Painful Feet > > Hi All, > > My mother was diagnosed with Shy Drager about 2 years ago. The > worst part of the whole disease (and there are many) is that her feet > ache so badly > that she can't really get much rest. Does anyone have the same type > of symptom or know of anything that might give her some relief. > > Thanks, > > Chris > > If you do not wish to belong to shydrager, you may unsubscribe by > sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 , I've heard of people being a pain in the .... But a pain in the foot is a new one ) Charlotte did have more pain in her feet than anywhere most of the time, toward the end, however the dystonia got into her hands and caused pain there. Heat did help (we had a couple of the roll pillows with the buckwheat seeds inside which we warmed in the microwave). Also the pain got worse as the Sinemet wore off, so we alternated Sinemet and Baclofen. How are things in the Carolinas these days? Take care, Bill Werre ================================ > > > Date: 2002/07/15 Mon PM 04:07:18 CDT > To: shydrager > > Subject: RE: Painful Feet > > Greetings Carol! (And ... And Bill !!) > > Carol, you noted: > > > Interestingly, ... the foot thing is the one Rob > > complains about most too. > > AMEN! There are days I would give ANYTHING to have my feet hacked off! > If I face stress at work (or home), then the feet become FAR more > painful. Some days I can not even put on my hiking boots. > Interestingly, a short nap often helps me move the pain back to a > reasonable level. It doesn't eliminate it, but it helps. > > And yes, I find that adding an extra muscle relaxant helps. > > > Regards, > =jbf= > > B. Fisher > > > Re: Painful Feet > > > > > My husband Rob has had a lot of problem with foot cramping. He finally > got relief from an increased dose of sinamet. Other things that help > are massage, and if your mother is able to stand up, rolling the foot on > a foam cylinder or even a tennis ball. I suppose you could do either > sitting down, but it seems like standing would be less awkward. > > Interestingly, although as you say there are lots of bad parts of MSA, > the foot thing is the one Rob complains about most too. > > Good luck, > > Carol & Rob > Lexington, MA > Re: Painful Feet > > > > > > Hi All, > > > > My mother was diagnosed with Shy Drager about 2 years ago. The > > worst part of the whole disease (and there are many) is that her feet > > ache so > badly > > that she can't really get much rest. Does anyone have the same type > > of symptom or know of anything that might give her some relief. > > > > Thanks, > > > > Chris > > > > If you do not wish to belong to shydrager, you may unsubscribe by > > sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2002 Report Share Posted July 15, 2002 Where does your mother live in Western, MA? There is another woman who lives in Western MA who's daughter also reads the list. Perhaps we could get them together. In terms of doctors, here is a link to the list of doctors seen by our local support group members: http://groups.yahoo.com/group/shydrager/files/US%20MSA%20Support%20Groups/US %20Local%20MSA%20Support%20Group%20Meetings/New%20England%20Area%20Support%2 0Group/Boston%20Area%20Doctors%20with%20Experience%20Treating%20MSA.doc (I am also sending this as an attachment.) Dr. a Ravin at UMass Medical Center sees several patients from our group and the people who see her seem very pleased and say that she is very knowledgeable. That might be a good solution for your mother rather than traveling all the way into Boston. My husband Rob sees Dr. Roy Freeman and he is quite good but it is difficult to get in to see him. If you have questions after reviewing the list, post them here and the patients who see the various docs can answer. We will be having a support group meeting at the end of July if you are interested in attending. I have posted the message to the list but if you need another copy please email me directly and I will send it along. Carol & Rob Lexington, MA Re: Painful Feet > Dear Carol: > > Thank you for your hints on helping my mother's painful feet. I have > noticed your email before and I see that you are live in Lexington. My > mother lives in the western part of Massachusetts and I am interested in what > facilities there are in MA. that might help her in the Shy Drager fight. Her > neurologist has never really seen anyone with Shy Drager syndrome and even > though he is a decent man - I thought there might be someone in Boston that > we might contact. She really doesn't travel well- just coming to visit me in > lin, MA, was exhausting. > > Sincerely, > > Chris > lin, MA > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Greetings Bill! Oh, I don't have a pain in the ... But my wife would cheerfully share that I must be contagious, since she finds that I am a pain in the ... !! So far, I don't seem to have symptoms that Sinemet would address. So, the muscle relaxants seem to be a big help. I am going to request an increase from three to four dosages per day. I won't always need it, but the need has been increasing to two to three times per week. It's also interesting that sleep helps so much. It just confirms that it is likely all of this is connected to neurological issues, since neurotransmitters are replenished during sleep (at least per several articles I've read on this). And yes, heat also helps relax the muscles. Another trick is to heat an couple of moist oven mittens in the microwave. Both the heat and humidity seems to help. Things have been very 'interesting' here with work. Been VERY busy. It gets harder and harder to handle the load. But I continue to try. My neurologist has warned me he may recommend long term disability based on how I answer questions about work. Since that would lead to a 25-30% pay cut, I would prefer to extend that as long as possible. But it is harder for me to deal with ALL the recent changes in my company. Oh well, it keeps me busy and in trouble! Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 , One note about long term disability. If YOU are paying the insurance premiums, the disability income is NOT taxable. If your employer pays the premiums the disability income IS taxable. Many employers offer an option to pay yourself. If you are not already doing this, check with your HR department to see if it is possible. Avoiding income taxes on the disability income makes it go much farther! Carol & Rob (2 former CFO's) Lexington, MA RE: Painful Feet > Greetings Bill! > > Oh, I don't have a pain in the ... But my wife would cheerfully share > that I must be contagious, since she finds that I am a pain in the ... > !! > > So far, I don't seem to have symptoms that Sinemet would address. So, > the muscle relaxants seem to be a big help. I am going to request an > increase from three to four dosages per day. I won't always need it, > but the need has been increasing to two to three times per week. > > It's also interesting that sleep helps so much. It just confirms that > it is likely all of this is connected to neurological issues, since > neurotransmitters are replenished during sleep (at least per several > articles I've read on this). > > And yes, heat also helps relax the muscles. Another trick is to heat an > couple of moist oven mittens in the microwave. Both the heat and > humidity seems to help. > > Things have been very 'interesting' here with work. Been VERY busy. It > gets harder and harder to handle the load. But I continue to try. My > neurologist has warned me he may recommend long term disability based on > how I answer questions about work. Since that would lead to a 25-30% > pay cut, I would prefer to extend that as long as possible. > > But it is harder for me to deal with ALL the recent changes in my > company. Oh well, it keeps me busy and in trouble! > > > Regards, > =jbf= > > B. Fisher > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 , On the job, just be aware that with MSA-C the maximum time you can work seems to be about five years. Granted that there are other disorders which are similar and allow you more time. Your job may also give you an advantage in that you can work from home and may be able to choose your hours. If I were you, I would plan a " siesta " of 1-2 hours in the middle of my work hours if at all possible. I too noticed an improvement after Charlotte UP time after a nap. Especially between the fifth and eighth years. Take care, Bill Werre ======================================== > > > Date: 2002/07/16 Tue PM 12:07:51 CDT > To: shydrager > > Subject: RE: Painful Feet > > Greetings Bill! > > Oh, I don't have a pain in the ... But my wife would cheerfully share > that I must be contagious, since she finds that I am a pain in the ... > !! > > So far, I don't seem to have symptoms that Sinemet would address. So, > the muscle relaxants seem to be a big help. I am going to request an > increase from three to four dosages per day. I won't always need it, > but the need has been increasing to two to three times per week. > > It's also interesting that sleep helps so much. It just confirms that > it is likely all of this is connected to neurological issues, since > neurotransmitters are replenished during sleep (at least per several > articles I've read on this). > > And yes, heat also helps relax the muscles. Another trick is to heat an > couple of moist oven mittens in the microwave. Both the heat and > humidity seems to help. > > Things have been very 'interesting' here with work. Been VERY busy. It > gets harder and harder to handle the load. But I continue to try. My > neurologist has warned me he may recommend long term disability based on > how I answer questions about work. Since that would lead to a 25-30% > pay cut, I would prefer to extend that as long as possible. > > But it is harder for me to deal with ALL the recent changes in my > company. Oh well, it keeps me busy and in trouble! > > > Regards, > =jbf= > > B. Fisher > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Greetings Carol! Unfortunately for me the company pays for 50% of income. I then have to pay the uplift to move it to 70%. So, not only is it taxable, but I also get to pay on the uplifted part. Sigh! I hope the new benefits from the merged company will allow me to PAY for the coverage. That would be best of situations for me. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
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